At the start of diagnosis scared

Heres a brief outline. Hit with symptoms 11 yrs ago. Was tested for M.S Neuro wanted more tests as though the M.R.I was showing nothing he still had concerns. I started feeling better left his care convincing my self it was M.E. This first event left me a little unbalanced with slight double vision. If I got ill my eyes always got worse as did my balance. 2 weeks ago I suddenly became so tired that I felt drugged then my left side face down to foot had altered sensation. My memory failed my concentration was dreadful. If I got an ocular migrane the image I get is just in the left hand eye and I find it tricky to find words. now my mouth feels like I’ve been to the dentist numb and a little burnt my throat feels the same eating is tricky. So I had an energy c.t scan which was clear. To be told that I need an emergency Neuro appointment for a MRI and lumbar puncture. I asked if she thought M.S her reply was yes. Wondering about remitting regressing M.S. what ever it is I’m feeling out of control and frightened to be honest


Basically, until a neurologist has seen an MRI scan which shows demyelinating lesions and possibly an LP, no one can reliably tell you that you have MS.

Try to quell your panic, have the tests and then the neurology appointment. At that point you’ll know if it is MS or not. You’ve already had symptoms years ago that didn’t result in a diagnosis, so it’s possible the same thing will happen again.

And if it does turn out to be MS then there are disease modifying drugs (DMDs) which aim to reduce the number and severity of relapses. So you may not end up having relapse after relapse and badly disabled by it. Many people live with MS for years without serious impact on their lives.

Best of luck with the testing and neurological examination.


Thankyou. GP surgery have messed up and not put though an urgent Neuro request. I only found out as I was chasing a sick note. The hospital rang them to make sure they did it last Thursday. Feel that I will have to see a neurologist first then have tests. Will be a long wait. Mean while I have to get back to work. I don’t get paid have allowed my self three weeks. This is week 1 1/2 I do things and then I’m totally wiped out.Dull emotions and risk taking. Just can’t feel angry over the doctors. My dog today had to be taken to the vets with cancer. Still ibfeel no emotion. All I feel is sadness and loneliness which is crazy as my friends have been amazing. But I just want some one with me all the time. Usually I’m happy to be alone now I hate it. I’m past being scared of any diagnosis feel totally done. Oh yes GP told me to go to A&E if I feel worse !! Really!!! A&E can do nothing. No wonder the A&Es are packed all the time.

Hi Juju,

The stage of waiting for a diagnosis, or limbo, as we call it is an awful state. And no one should tell you otherwise.

Most people on this Forum have been there and will empathise with what you are going through right now. You can use this site to vent your frustration, express your fears or just have a chat with like minded people who care. It’s a lot better than A&E most of the time!

Best wishes,


Thankyou Anthony. Means a lot I feel the need to vent away from those who love me. I try to put on a brave front.but honestly I’ve never cried so much. I get highs when I feel fine then over do things. Taking terrible risks as well. Driving at top speed towards bends I know I can’t go round just slowing in time. Taking risks in other ways as well. The high takes away the fear. The fogging tiredness is just horrible today I’ve been out of bed 5 hours. Got up at 5am took my dogs to the woods walking barefoot as I can’t stand wearing shoes as they feel odd on my feet. It was beautiful but I was dizzy and unbalanced in a woods alone. Crazy !!! On the plus side my dogs had a great time !